Caring For The Caregiver
By Valerie Rhoda
We’ve all cared for someone with an illness for a few days. Many have found it to be a rewarding experience. Then life returns to “normal.” The temporary caregiver has little knowledge of the physical and psychological impact of full time care-giving. Being a caregiver means managing two adult lives on a daily basis, with no hope of them “growing up and becoming independent”. The demands increase as the caregiver helplessly watches their care-givee deteriorate. One member describes the disease as a “thief” who has stolen their partner and just left their shell.
Caregivers experience a myriad of conflicting emotions. Love and concern, denial, frustration, resentment, anger, depression, exhaustion, feeling overwhelmed by the Herculean responsibilities they shoulder alone. The dynamics of the relationship change, the caregiver unwittingly becomes parental which can be perceived by the care-givee as demeaning and infantilizing. Unresolved issues, family conflicts arise both in communication style and about the type of care being provided. Adult children can be a great support or, as often happens, unable to accept the reality of their parent’s condition and/or critical of the caregiver.
The CAREGIVER SUPPORT GROUP was created eight years ago to provide a safe, confidential cocoon for members to share their feelings without being judged. New members often express relief at being able to say things out loud that they wouldn’t dare say to others or even admit to themselves. Anyone care-giving is welcome, for whatever time they can spare.
Care-giving is isolating; friends get tired of listening and often pull away because that could be their future. Rarely do people ask how is the caregiver, mostly just how is the care-givee. People often enter the group after they’ve lost themselves in the overwhelming demands of care-giving. They are emotionally and physically depleted. They have neglected their health, they are often full of guilt and recrimination. Even though they have given up so much of themselves, to provide for their care-givee, they feel they should be doing more.
I put out two signs at each meeting. One says “My needs come first.” something new members balk at until they realize, as one member said, “if you don’t take care of you, who will be there for your care-givee?” Taking care of oneself makes one available to care for their person. The other sign says “I don’t have to be a hero, just be good enough”. Many caregivers feel they should be super humans and manage everything and pressure themselves to do more than they physically or emotionally can. Hearing each other’s stories helps members accept their limitations and change the focus to self care, which is essential (60% of caregivers become ill and/or die before their care-givee).
The group assists members as they wrestle with putting their person in care. It’s a heart wrenching process, fraught with guilt and feelings of betrayal. They help the member see the dangers to both parties in keeping the person at home. In late stage dementia, as an example, the care-givee can be aggressive, abusive or wander. Frail elderly have higher incidences of falling, there are toileting requirements, etc. physical requirements the caregiver is no longer capable of providing. One third of the group has their person in care. They can share how they chose a facility and dealt with their feelings about the process.
Caregivers commonly experience “ANTICIPATORY GRIEF”. It is a healthy way to prepare the psyche for the death of their care-givee and the vision they had of growing old with their person. One member coined the term “an anchor into the future”, as a way to give permission to think and plan for a life after caregiving, without feeling disloyal to their person and giving them something for themselves.
Members put aside their own burdens to listen and support each other. This is accomplished by hugs and laughter and excellent tips and skills they’ve acquired. I provide articles on care-giving, diseases and therapeutic techniques.
HOW CAN YOU HELP A CAREGIVER? LISTEN. Offer CONCRETE assistance, such as grocery shopping, doing laundry, providing respite, staying with the care-givee, allowing them to reconnect with themselves or friends. Pay for a caregiver for a few hours, give them a spa day. Give them a HUG!
LIFE AFTER CAREGIVING: Often after the death of the care-givee there is grief and relief. Their care-givee is no longer suffering, and they are no longer responsible for another person’s existence. They can begin to build a life for themselves. They realize care-giving has become their identity. They have to reclaim and create a post care-giving persona. What does life looks like if you are not care-giving? Can you resume your prior life? Do you make a new life?
Most members “graduate” into the GRIEF SUPPORT GROUP which grew out of the need to provide ongoing support to caregivers and to others dealing with the loss of a loved one. It enables members to sort out their feelings and deal with the parallel paths of grieving and rebuilding.
The groups meet on the second and fourth Wednesdays, CAREGIVER SUPPORT, 10:30-1pm and GRIEF SUPPORT, 2:30-4:30pm. Both are FREE and CONFIDENTIAL, facilitated by a counselor with extensive group experience and expertise in these areas.